Nadiya Pelovitz was diagnosed at 13 months with lynex gesteaux syndrome, which is a severe form of epilepsy that, in addition to seizures, has dramatically affected her development.
Nadiya’s parents said she didn’t respond well to medicine to control her seizures, so they went to Dr. Eric Kossoff at the Johns Hopkins Children’s Center for treatment. Kossoff, the associate professor of pediatric neurology, co-authored a book on ketogenic diets as a medical therapy for epilepsy.
“The diet is something that families have to agree to do. It’s restrictive. It’s a 90 percent fat diet and very low in carbohydrates. In a way, it’s like the Atkins diet, but it’s much more restrictive,” Kossoff said.
The family said they decided to try it out, and it’s done wonders.
“After starting the diet, we don’t have to be in the hospital every couple of months with her seizures. She was having grand mal seizures every few weeks, and since we’ve started the diet, she hasn’t had them at all,” said David Pelovitz, Nadiya’s father, who is the family cook.
He prepares most of Nadiya’s meals. While they may not seem appetizing to most people — one of Nadiya’s favorite snacks is peanut butter and butter – doctors said they work well for about half of the patients treated at Hopkins.
Kossoff said the diet puts patients in a state of ketosis, which mimics starvation. He said it can be adapted for kids from infancy to adolescence, and even adults are having success on it.
Side effects can include constipation, higher cholesterol and vomiting.
“Usually, we can change the diet to make that better,” Kossoff said.
While most patients stay on the diet for about two years, Nadiya’s been on it for five, and her mother said it’s changed the quality of her life completely.
“It’s stopped the big seizures that she was having. They would take away development that she gained. Having those stop, she started to show signs of development. She started to interact with us. We started to see her personality. We started to see what she liked and disliked, and we got to know her,” Jill Pelovitz said.
She said parents of children with severe epilepsy should at least try it.
“Even if it doesn’t work for them, at least they can say they tried. Because if it does work, it could change their lives, their child’s quality of life, and it could bring a lot of hope,” she said.
Read more and watch the video here: http://www.wbaltv.com/health/30794631/detail.html#ixzz1qXGL4KJP